“I never want another parent to feel as desolate and as frightened as I did”

When my children were little, one by one they were each diagnosed with devastating disabilities. I was overwhelmed with emotions, I was exhausted and lost. It got even worse when two of them were also diagnosed with additional life-threatening illnesses which lasted for several years. I really didn’t think I was going to cope – I knew nothing about disability or how to support a child through serious ill-health.

Now, all three of them are on the brink of adulthood, they all survived, in fact they have done a lot better than mere survival. We pulled together, we muddled through, and we learnt to laugh a lot too.

I never want another parent to feel as desolate and as frightened as I did. So I’ve written the book I wish someone had given me in those bleak early days.

The Special Parent’s Handbook

It’s a comprehensive parenting manual for families like ours. It’s packed full of all the tips, tricks and strategies we learnt – the things we discovered and invented along the way as we stumbled from one crisis to the next. It has lots of quirky solutions nobody else would ever think of unless they also have children like ours.

A doctor can tell you how to manage your child’s condition but this book shows you how to care for your whole family. It will help you get through those long hospital admissions that are often part-and-parcel of having a serious disability. It will talk about how to cope with those days when you feel like you’re drowning in a sea of negative emotions. It also has lots of ideas to make sure your other children don’t miss out, and real-life solutions to things that most people wouldn’t even understand. I’ve written extensively about how to get the best outcomes for your child from all the meetings, appointments and funding decisions which cause so much frustration and heartache.

It’s also a story of our family growing up. If you read it, you’ll get to know Francesca, Toby and Adam along the way too. I’ve used dozens of things that really happened to illustrate ways of getting yourself out of the tightest of corners.

I’ve shared all the things I learned the hard way. It’s the “dos and don’ts” guide to steering your way through – and I’ve also passed on some of the mistakes I made!

The response so far

It came out in June, and the response has been better than I could have possibly wished for. Dozens of parents have contacted me to tell me how much easier things are for their families since reading the book. GPs have told me that they have adopted new approaches when seeing patients with a learning disability because of what they have learnt from it. Great Ormond Street Hospital liked the book so much that they have ordered a copy for every ward so that all their parents have easy access to it. The reviews on Amazon can’t seem to praise the book enough. I even received a very special letter this week from Nicky Morgan, the Secretary of State for Education, who praised the book.

If you do read it, I’d love to know what you think, your feedback will be really helpful! Lots of people have already asked me to get started on another book – so anything you tell me will help me know what I should write about next!